Autism Spectrum Disorders (Pervasive Developmental Disorders)

Not until the middle of the twentieth century was there a name for a
disorder that now appears to affect an estimated 3.4 every 1,000 children
ages 3-10, a disorder that causes disruption in families and unfulfilled
lives for many children. In 1943 Dr. Leo Kanner of the Johns Hopkins
Hospital studied a group of 11 children and introduced the label early
infantile autism into the English language. At the same time a
German scientist, Dr. Hans Asperger, described a milder form of the
disorder that became known as Asperger syndrome. Thus these two disorders
were described and are today listed in the Diagnostic and Statistical
Manual of Mental Disorders DSM-IV-TR (fourth edition, text
revision)1 as two
of the five pervasive developmental disorders (PDD), more often referred to
today as autism spectrum disorders (ASD). All these disorders are
characterized by varying degrees of impairment in communication skills,
social interactions, and restricted, repetitive and stereotyped patterns of
behavior.

The autism spectrum disorders can often be reliably detected by the age of
3 years, and in some cases as early as 18 months.2
Studies suggest that many children eventually may be accurately identified
by the age of 1 year or even younger. The appearance of any of the warning
signs of ASD is reason to have a child evaluated by a professional
specializing in these disorders.

Parents are usually the first to notice unusual behaviors in their child.
In some cases, the baby seemed "different" from birth, unresponsive to
people or focusing intently on one item for long periods of time. The first
signs of an ASD can also appear in children who seem to have been
developing normally. When an engaging, babbling toddler suddenly becomes
silent, withdrawn, self-abusive, or indifferent to social overtures,
something is wrong. Research has shown that parents are usually correct
about noticing developmental problems, although they may not realize the
specific nature or degree of the problem.

The pervasive developmental disorders, or autism spectrum disorders, range
from a severe form, called autistic disorder, to a milder form, Asperger
syndrome. If a child has symptoms of either of these disorders, but does
not meet the specific criteria for either, the diagnosis is called
pervasive developmental disorder not otherwise specified (PDD-NOS). Other
rare, very severe disorders that are included in the autism spectrum
disorders are Rett syndrome and childhood disintegrative disorder. This
brochure will focus on classic autism, PDD-NOS, and Asperger syndrome, with
brief descriptions of Rett syndrome and childhood disintegrative disorder
on the following page.

Rare Autism Spectrum Disorders

Rett Syndrome

Rett syndrome is relatively rare, affecting almost exclusively females,
one out of 10,000 to 15,000. After a period of normal development, sometime
between 6 and 18 months, autism-like symptoms begin to appear. The little
girl's mental and social development regresses—she no longer responds to
her parents and pulls away from any social contact. If she has been
talking, she stops; she cannot control her feet; she wrings her hands. Some
of the problems associated with Rett syndrome can be treated. Physical,
occupational, and speech therapy can help with problems of coordination,
movement, and speech.

Scientists sponsored by the National Institute of Child Health and Human
Development have discovered that a mutation in the sequence of a single
gene can cause Rett syndrome. This discovery may help doctors slow or stop
the progress of the syndrome. It may also lead to methods of screening for
Rett syndrome, thus enabling doctors to start treating these children much
sooner, and improving the quality of life these children experience.*

Childhood Disintegrative Disorder

Very few children who have an autism spectrum disorder (ASD) diagnosis
meet the criteria for childhood disintegrative disorder (CDD). An estimate
based on four surveys of ASD found fewer than two children per 100,000 with
ASD could be classified as having CDD. This suggests that CDD is a very
rare form of ASD. It has a strong male preponderance.**
Symptoms may appear by age 2, but the average age of onset is between 3 and
4 years. Until this time, the child has age-appropriate skills in
communication and social relationships. The long period of normal
development before regression helps differentiate CDD from Rett
syndrome.

The loss of such skills as vocabulary are more dramatic in CDD than they
are in classical autism. The diagnosis requires extensive and pronounced
losses involving motor, language, and social skills.*** CDD is also accompanied by loss of bowel and bladder control and
oftentimes seizures and a very low IQ.

***Volkmar RM and Rutter M. Childhood disintegrative
disorder: Results of the DSM-IV autism field trial. Journal of the
American Academy of Child and Adolescent Psychiatry, 1995; 34:
1092-1095.

What Are the Autism Spectrum Disorders?

The autism spectrum disorders are more common in the pediatric population
than are some better known disorders such as diabetes, spinal bifida, or
Down syndrome.2
Prevalence studies have been done in several states and also in the United
Kingdom, Europe, and Asia. A recent study of a U.S. metropolitan area
estimated that 3.4 of every 1,000 children 3-10 years old had
autism.3 This
wide range of prevalence points to a need for earlier and more accurate
screening for the symptoms of ASD. The earlier the disorder is diagnosed,
the sooner the child can be helped through treatment interventions.
Pediatricians, family physicians, daycare providers, teachers, and parents
may initially dismiss signs of ASD, optimistically thinking the child is
just a little slow and will "catch up." Although early intervention has a
dramatic impact on reducing symptoms and increasing a child's ability to
grow and learn new skills, it is estimated that only 50 percent of
children are diagnosed before kindergarten.

All children with ASD demonstrate deficits in 1) social interaction, 2)
verbal and nonverbal communication, and 3) repetitive behaviors or
interests. In addition, they will often have unusual responses to sensory
experiences, such as certain sounds or the way objects look. Each of these
symptoms runs the gamut from mild to severe. They will present in each
individual child differently. For instance, a child may have little trouble
learning to read but exhibit extremely poor social interaction. Each child
will display communication, social, and behavioral patterns that are
individual but fit into the overall diagnosis of ASD.

Children with ASD do not follow the typical patterns of child development.
In some children, hints of future problems may be apparent from birth. In
most cases, the problems in communication and social skills become more
noticeable as the child lags further behind other children the same age.
Some other children start off well enough. Oftentimes between 12 and 36
months old, the differences in the way they react to people and other
unusual behaviors become apparent. Some parents report the change as being
sudden, and that their children start to reject people, act strangely, and
lose language and social skills they had previously acquired. In other
cases, there is a plateau, or leveling, of progress so that the difference
between the child with autism and other children the same age becomes more
noticeable.

ASD is defined by a certain set of behaviors that can range from the very
mild to the severe. The following possible indicators of ASD were
identified on the Public Health Training Network Webcast, Autism
Among Us.4

Possible Indicators of Autism Spectrum Disorders

Does not babble, point, or make meaningful gestures by 1 year of
age

Does not speak one word by 16 months

Does not combine two words by 2 years

Does not respond to name

Loses language or social skills

Some Other Indicators

Poor eye contact

Doesn't seem to know how to play with toys

Excessively lines up toys or other objects

Is attached to one particular toy or object

Doesn't smile

At times seems to be hearing impaired

Social Symptoms

From the start, typically developing infants are social beings. Early in
life, they gaze at people, turn toward voices, grasp a finger, and even
smile.

In contrast, most children with ASD seem to have tremendous difficulty
learning to engage in the give-and-take of everyday human interaction. Even
in the first few months of life, many do not interact and they avoid eye
contact. They seem indifferent to other people, and often seem to prefer
being alone. They may resist attention or passively accept hugs and
cuddling. Later, they seldom seek comfort or respond to parents' displays
of anger or affection in a typical way. Research has suggested that
although children with ASD are attached to their parents, their expression
of this attachment is unusual and difficult to "read." To parents, it may
seem as if their child is not attached at all. Parents who looked forward
to the joys of cuddling, teaching, and playing with their child may feel
crushed by this lack of the expected and typical attachment behavior.

Children with ASD also are slower in learning to interpret what others are
thinking and feeling. Subtle social cues—whether a smile, a wink, or a
grimace—may have little meaning. To a child who misses these cues, "Come
here" always means the same thing, whether the speaker is smiling and
extending her arms for a hug or frowning and planting her fists on her
hips. Without the ability to interpret gestures and facial expressions, the
social world may seem bewildering. To compound the problem, people with ASD
have difficulty seeing things from another person's perspective. Most
5-year-olds understand that other people have different information,
feelings, and goals than they have. A person with ASD may lack such
understanding. This inability leaves them unable to predict or understand
other people's actions.

Although not universal, it is common for people with ASD also to have
difficulty regulating their emotions. This can take the form of "immature"
behavior such as crying in class or verbal outbursts that seem
inappropriate to those around them. The individual with ASD might also be
disruptive and physically aggressive at times, making social relationships
still more difficult. They have a tendency to "lose control," particularly
when they're in a strange or overwhelming environment, or when angry and
frustrated. They may at times break things, attack others, or hurt
themselves. In their frustration, some bang their heads, pull their hair,
or bite their arms.

Communication Difficulties

By age 3, most children have passed predictable milestones on the path to
learning language; one of the earliest is babbling. By the first birthday,
a typical toddler says words, turns when he hears his name, points when he
wants a toy, and when offered something distasteful, makes it clear that
the answer is "no."

Some children diagnosed with ASD remain mute throughout their lives. Some
infants who later show signs of ASD coo and babble during the first few
months of life, but they soon stop. Others may be delayed, developing
language as late as age 5 to 9. Some children may learn to use
communication systems such as pictures or sign language.

Those who do speak often use language in unusual ways. They seem unable to
combine words into meaningful sentences. Some speak only single words,
while others repeat the same phrase over and over. Some ASD children parrot
what they hear, a condition called echolalia. Although many
children with no ASD go through a stage where they repeat what they hear,
it normally passes by the time they are 3.

Some children only mildly affected may exhibit slight delays in language,
or even seem to have precocious language and unusually large vocabularies,
but have great difficulty in sustaining a conversation. The "give and take"
of normal conversation is hard for them, although they often carry on a
monologue on a favorite subject, giving no one else an opportunity to
comment. Another difficulty is often the inability to understand body
language, tone of voice, or "phrases of speech." They might interpret a
sarcastic expression such as "Oh, that's just great" as meaning it really
IS great.

While it can be hard to understand what ASD children are saying, their
body language is also difficult to understand. Facial expressions,
movements, and gestures rarely match what they are saying. Also, their tone
of voice fails to reflect their feelings. A high-pitched, sing-song, or
flat, robot-like voice is common. Some children with relatively good
language skills speak like little adults, failing to pick up on the
"kid-speak" that is common in their peers.

Without meaningful gestures or the language to ask for things, people with
ASD are at a loss to let others know what they need. As a result, they may
simply scream or grab what they want. Until they are taught better ways to
express their needs, ASD children do whatever they can to get through to
others. As people with ASD grow up, they can become increasingly aware of
their difficulties in understanding others and in being understood. As a
result they may become anxious or depressed.

Repetitive Behaviors

Although children with ASD usually appear physically normal and have good
muscle control, odd repetitive motions may set them off from other
children. These behaviors might be extreme and highly apparent or more
subtle. Some children and older individuals spend a lot of time repeatedly
flapping their arms or walking on their toes. Some suddenly freeze in
position.

As children, they might spend hours lining up their cars and trains in a
certain way, rather than using them for pretend play. If someone
accidentally moves one of the toys, the child may be tremendously upset.
ASD children need, and demand, absolute consistency in their environment. A
slight change in any routine—in mealtimes, dressing, taking a bath, going
to school at a certain time and by the same route—can be extremely
disturbing. Perhaps order and sameness lend some stability in a world of
confusion.

Repetitive behavior sometimes takes the form of a persistent, intense
preoccupation. For example, the child might be obsessed with learning all
about vacuum cleaners, train schedules, or lighthouses. Often there is
great interest in numbers, symbols, or science topics.

Problems That May Accompany ASD

Sensory problems. When children's perceptions are
accurate, they can learn from what they see, feel, or hear. On the other
hand, if sensory information is faulty, the child's experiences of the
world can be confusing. Many ASD children are highly attuned or even
painfully sensitive to certain sounds, textures, tastes, and smells. Some
children find the feel of clothes touching their skin almost unbearable.
Some sounds—a vacuum cleaner, a ringing telephone, a sudden storm, even the
sound of waves lapping the shoreline—will cause these children to cover
their ears and scream.

In ASD, the brain seems unable to balance the senses appropriately. Some
ASD children are oblivious to extreme cold or pain. An ASD child may fall
and break an arm, yet never cry. Another may bash his head against a wall
and not wince, but a light touch may make the child scream with alarm.

Mental retardation. Many children with ASD have some
degree of mental impairment. When tested, some areas of ability may be
normal, while others may be especially weak. For example, a child with ASD
may do well on the parts of the test that measure visual skills but earn
low scores on the language subtests.

Seizures. One in four children with ASD develops
seizures, often starting either in early childhood or adolescence. 5 Seizures, caused by abnormal electrical activity in the
brain, can produce a temporary loss of consciousness (a "blackout"), a body
convulsion, unusual movements, or staring spells. Sometimes a contributing
factor is a lack of sleep or a high fever. An EEG
(electroencephalogram—recording of the electric currents developed in the
brain by means of electrodes applied to the scalp) can help confirm the
seizure's presence.

In most cases, seizures can be controlled by a number of medicines called
"anticonvulsants." The dosage of the medication is adjusted carefully so
that the least possible amount of medication will be used to be
effective.

Fragile X syndrome. This disorder is the most common
inherited form of mental retardation. It was so named because one part of
the X chromosome has a defective piece that appears pinched and fragile
when under a microscope. Fragile X syndrome affects about two to five
percent of people with ASD. It is important to have a child with ASD
checked for Fragile X, especially if the parents are considering having
another child. For an unknown reason, if a child with ASD also has Fragile
X, there is a one-in-two chance that boys born to the same parents will
have the syndrome. 6 Other
members of the family who may be contemplating having a child may also wish
to be checked for the syndrome.

Tuberous Sclerosis. Tuberous sclerosis is a rare genetic
disorder that causes benign tumors to grow in the brain as well as in other
vital organs. It has a consistently strong association with ASD. One to 4
percent of people with ASD also have tuberous sclerosis.7

The Diagnosis of Autism Spectrum Disorders

Although there are many concerns about labeling a young child with an ASD,
the earlier the diagnosis of ASD is made, the earlier needed interventions
can begin. Evidence over the last 15 years indicates that intensive early
intervention in optimal educational settings for at least 2 years
during the preschool years results in improved outcomes in most
young children with ASD.2

In evaluating a child, clinicians rely on behavioral characteristics to
make a diagnosis. Some of the characteristic behaviors of ASD may be
apparent in the first few months of a child's life, or they may appear at
any time during the early years. For the diagnosis, problems in at least
one of the areas of communication, socialization, or restricted behavior
must be present before the age of 3. The diagnosis requires a two-stage
process. The first stage involves developmental screening during "well
child" check-ups; the second stage entails a comprehensive evaluation by a
multidisciplinary team.8

Screening

A "well child" check-up should include a developmental screening test. If
your child's pediatrician does not routinely check your child with such a
test, ask that it be done. Your own observations and concerns about your
child's development will be essential in helping to screen your
child.8
Reviewing family videotapes, photos, and baby albums can help parents
remember when each behavior was first noticed and when the child reached
certain developmental milestones.

Several screening instruments have been developed to quickly gather
information about a child's social and communicative development within
medical settings. Among them are the Checklist of Autism in Toddlers
(CHAT),9 the
modified Checklist for Autism in Toddlers (M-CHAT),10 the
Screening Tool for Autism in Two-Year-Olds (STAT),11 and
the Social Communication Questionnaire (SCQ)12 (for
children 4 years of age and older).

Some screening instruments rely solely on parent responses to a
questionnaire, and some rely on a combination of parent report and
observation. Key items on these instruments that appear to differentiate
children with autism from other groups before the age of 2 include pointing
and pretend play. Screening instruments do not provide individual diagnosis
but serve to assess the need for referral for possible diagnosis of ASD.
These screening methods may not identify children with mild ASD, such as
those with high-functioning autism or Asperger syndrome.

During the last few years, screening instruments have been devised to
screen for Asperger syndrome and higher functioning autism. The Autism
Spectrum Screening Questionnaire (ASSQ),13 the
Australian Scale for Asperger's Syndrome,14 and
the most recent, the Childhood Asperger Syndrome Test (CAST),15 are some of the instruments that are reliable for
identification of school-age children with Asperger syndrome or higher
functioning autism. These tools concentrate on social and behavioral
impairments in children without significant language delay.

If, following the screening process or during a routine "well child"
check-up, your child's doctor sees any of the possible indicators of ASD,
further evaluation is indicated.

Comprehensive Diagnostic Evaluation

The second stage of diagnosis must be comprehensive in order to accurately
rule in or rule out an ASD or other developmental problem. This evaluation
may be done by a multidisciplinary team that includes a psychologist, a
neurologist, a psychiatrist, a speech therapist, or other professionals who
diagnose children with ASD.

Because ASDs are complex disorders and may involve other neurological or
genetic problems, a comprehensive evaluation should entail neurologic and
genetic assessment, along with in-depth cognitive and language
testing.8 In
addition, measures developed specifically for diagnosing autism are often
used. These include the Autism Diagnosis Interview-Revised (ADI-R)16 and the Autism Diagnostic Observation Schedule
(ADOS-G).17 The
ADI-R is a structured interview that contains over 100 items and is
conducted with a caregiver. It consists of four main factors—the child's
communication, social interaction, repetitive behaviors, and age-of-onset
symptoms. The ADOS-G is an observational measure used to "press" for
socio-communicative behaviors that are often delayed, abnormal, or absent
in children with ASD.

Still another instrument often used by professionals is the Childhood
Autism Rating Scale (CARS).18 It
aids in evaluating the child's body movements, adaptation to change,
listening response, verbal communication, and relationship to people. It is
suitable for use with children over 2 years of age. The examiner observes
the child and also obtains relevant information from the parents. The
child's behavior is rated on a scale based on deviation from the typical
behavior of children of the same age.

Two other tests that should be used to assess any child with a
developmental delay are a formal audiologic hearing evaluation and a lead
screening. Although some hearing loss can co-occur with ASD, some children
with ASD may be incorrectly thought to have such a loss. In addition, if
the child has suffered from an ear infection, transient hearing loss can
occur. Lead screening is essential for children who remain for a long
period of time in the oral-motor stage in which they put any and everything
into their mouths. Children with an autistic disorder usually have elevated
blood lead levels.8

Customarily, an expert diagnostic team has the responsibility of
thoroughly evaluating the child, assessing the child's unique strengths and
weaknesses, and determining a formal diagnosis. The team will then meet
with the parents to explain the results of the evaluation.

Although parents may have been aware that something was not "quite right"
with their child, when the diagnosis is given, it is a devastating blow. At
such a time, it is hard to stay focused on asking questions. But while
members of the evaluation team are together is the best opportunity the
parents will have to ask questions and get recommendations on what further
steps they should take for their child. Learning as much as possible at
this meeting is very important, but it is helpful to leave this meeting
with the name or names of professionals who can be contacted if the parents
have further questions.

Available Aids

When your child has been evaluated and diagnosed with an autism spectrum
disorder, you may feel inadequate to help your child develop to the fullest
extent of his or her ability. As you begin to look at treatment options and
at the types of aid available for a child with a disability, you will find
out that there is help for you. It is going to be difficult to learn and
remember everything you need to know about the resources that will be most
helpful. Write down everything. If you keep a notebook, you will
have a foolproof method of recalling information. Keep a record of the
doctors' reports and the evaluation your child has been given so that his
or her eligibility for special programs will be documented. Learn
everything you can about special programs for your child; the more you
know, the more effectively you can advocate.

For every child eligible for special programs, each state guarantees
special education and related services. The Individuals with Disabilities
Education Act (IDEA) is a Federally mandated program that assures a free
and appropriate public education for children with diagnosed learning
deficits. Usually children are placed in public schools and the school
district pays for all necessary services. These will include, as needed,
services by a speech therapist, occupational therapist, school
psychologist, social worker, school nurse, or aide.

By law, the public schools must prepare and carry out a set of instruction
goals, or specific skills, for every child in a special education program.
The list of skills is known as the child's Individualized Education Program
(IEP). The IEP is an agreement between the school and the family on the
child's goals. When your child's IEP is developed, you will be asked to
attend the meeting. There will be several people at this meeting, including
a special education teacher, a representative of the public schools who is
knowledgeable about the program, other individuals invited by the school or
by you (you may want to bring a relative, a child care provider, or a
supportive close friend who knows your child well). Parents play an
important part in creating the program, as they know their child and his or
her needs best. Once your child's IEP is developed, a meeting is scheduled
once a year to review your child's progress and to make any alterations to
reflect his or her changing needs.

If your child is under 3 years of age and has special needs, he or she
should be eligible for an early intervention program; this program is
available in every state. Each state decides which agency will be the lead
agency in the early intervention program. The early intervention services
are provided by workers qualified to care for toddlers with disabilities
and are usually in the child's home or a place familiar to the child. The
services provided are written into an Individualized Family Service Plan
(IFSP) that is reviewed at least once every 6 months. The plan will
describe services that will be provided to the child, but will also
describe services for parents to help them in daily activities with their
child and for siblings to help them adjust to having a brother or sister
with ASD.

There is a list of resources at the back of the brochure that will be
helpful to you as you look for programs for your child.

Treatment Options

There is no single best treatment package for all children with ASD. One
point that most professionals agree on is that early intervention is
important; another is that most individuals with ASD respond well to highly
structured, specialized programs.

Before you make decisions on your child's treatment, you will want to
gather information about the various options available. Learn as much as
you can, look at all the options, and make your decision on your child's
treatment based on your child's needs. You may want to visit public schools
in your area to see the type of program they offer to special needs
children.

Guidelines used by the Autism Society of America include the following
questions parents can ask about potential treatments:

Will the treatment result in harm to my child?

How will failure of the treatment affect my child and family?

Has the treatment been validated scientifically?

Are there assessment procedures specified?

How will the treatment be integrated into my child's current program?
Do not become so infatuated with a given treatment that functional
curriculum, vocational life, and social skills are ignored.

The National Institute of Mental Health suggests a list of questions
parents can ask when planning for their child:

How successful has the program been for other children?

How many children have gone on to placement in a regular school and how
have they performed?

Do staff members have training and experience in working with children
and adolescents with autism?

How are activities planned and organized?

Are there predictable daily schedules and routines?

How much individual attention will my child receive?

How is progress measured? Will my child's behavior be closely observed
and recorded?

Will my child be given tasks and rewards that are personally
motivating?

Is the environment designed to minimize distractions?

Will the program prepare me to continue the therapy at home?

What is the cost, time commitment, and location of the program?

Among the many methods available for treatment and education of people
with autism, applied behavior analysis (ABA) has become widely accepted as
an effective treatment. Mental Health: A Report of the Surgeon
General states, "Thirty years of research demonstrated the
efficacy of applied behavioral methods in reducing inappropriate behavior
and in increasing communication, learning, and appropriate social
behavior."19 The
basic research done by Ivar Lovaas and his colleagues at the University of
California, Los Angeles, calling for an intensive, one-on-one child-teacher
interaction for 40 hours a week, laid a foundation for other educators and
researchers in the search for further effective early interventions to help
those with ASD attain their potential. The goal of behavioral management is
to reinforce desirable behaviors and reduce undesirable ones.20, 21

An effective treatment program will build on the child's interests, offer
a predictable schedule, teach tasks as a series of simple steps, actively
engage the child's attention in highly structured activities, and provide
regular reinforcement of behavior. Parental involvement has emerged as a
major factor in treatment success. Parents work with teachers and
therapists to identify the behaviors to be changed and the skills to be
taught. Recognizing that parents are the child's earliest teachers, more
programs are beginning to train parents to continue the therapy at
home.

As soon as a child's disability has been identified, instruction should
begin. Effective programs will teach early communication and social
interaction skills. In children younger than 3 years, appropriate
interventions usually take place in the home or a child care center. These
interventions target specific deficits in learning, language, imitation,
attention, motivation, compliance, and initiative of interaction. Included
are behavioral methods, communication, occupational and physical therapy
along with social play interventions. Often the day will begin with a
physical activity to help develop coordination and body awareness; children
string beads, piece puzzles together, paint, and participate in other motor
skills activities. At snack time the teacher encourages social interaction
and models how to use language to ask for more juice. The children learn by
doing. Working with the children are students, behavioral therapists, and
parents who have received extensive training. In teaching the children,
positive reinforcement is used.22

Children older than 3 years usually have school-based, individualized,
special education. The child may be in a segregated class with other
autistic children or in an integrated class with children without
disabilities for at least part of the day. Different localities may use
differing methods but all should provide a structure that will help the
children learn social skills and functional communication. In these
programs, teachers often involve the parents, giving useful advice in how
to help their child use the skills or behaviors learned at school when they
are at home.23

In elementary school, the child should receive help in any skill area that
is delayed and, at the same time, be encouraged to grow in his or her areas
of strength. Ideally, the curriculum should be adapted to the individual
child's needs. Many schools today have an inclusion program in which the
child is in a regular classroom for most of the day, with special
instruction for a part of the day. This instruction should include such
skills as learning how to act in social situations and in making friends.
Although higher-functioning children may be able to handle academic work,
they too need help to organize tasks and avoid distractions.

During middle and high school years, instruction will begin to address
such practical matters as work, community living, and recreational
activities. This should include work experience, using public
transportation, and learning skills that will be important in community
living.24

All through your child's school years, you will want to be an active
participant in his or her education program. Collaboration between parents
and educators is essential in evaluating your child's progress.

The Adolescent Years

Adolescence is a time of stress and confusion; and it is no less so for
teenagers with autism. Like all children, they need help in dealing with
their budding sexuality. While some behaviors improve during the teenage
years, some get worse. Increased autistic or aggressive behavior may be one
way some teens express their newfound tension and confusion.

The teenage years are also a time when children become more socially
sensitive. At the age that most teenagers are concerned with acne,
popularity, grades, and dates, teens with autism may become painfully aware
that they are different from their peers. They may notice that they lack
friends. And unlike their schoolmates, they aren't dating or planning for a
career. For some, the sadness that comes with such realization motivates
them to learn new behaviors and acquire better social skills.

Dietary and Other Interventions

In an effort to do everything possible to help their children, many
parents continually seek new treatments. Some treatments are developed by
reputable therapists or by parents of a child with ASD. Although an
unproven treatment may help one child, it may not prove beneficial to
another. To be accepted as a proven treatment, the treatment should undergo
clinical trials, preferably randomized, double-blind trials, that would
allow for a comparison between treatment and no treatment. Following are
some of the interventions that have been reported to have been helpful to
some children but whose efficacy or safety has not been proven.

Dietary interventions are based on the idea that 1) food
allergies cause symptoms of autism, and 2) an insufficiency of a specific
vitamin or mineral may cause some autistic symptoms. If parents decide to
try for a given period of time a special diet, they should be sure that the
child's nutritional status is measured carefully.

A diet that some parents have found was helpful to their autistic child is
a gluten-free, casein-free diet. Gluten is a casein-like substance that is
found in the seeds of various cereal plants—wheat, oat, rye, and barley.
Casein is the principal protein in milk. Since gluten and milk are found in
many of the foods we eat, following a gluten-free, casein-free diet is
difficult.

A supplement that some parents feel is beneficial for an autistic child is
Vitamin B6, taken with magnesium (which makes the vitamin effective). The
result of research studies is mixed; some children respond positively, some
negatively, some not at all or very little.5

In the search for treatment for autism, there has been discussion in the
last few years about the use of secretin, a substance approved by the Food
and Drug Administration (FDA) for a single dose normally given to aid in
diagnosis of a gastrointestinal problem. Anecdotal reports have shown
improvement in autism symptoms, including sleep patterns, eye contact,
language skills, and alertness. Several clinical trials conducted in the
last few years have found no significant improvements in symptoms between
patients who received secretin and those who received a placebo.25

Medications Used in Treatment

Medications are often used to treat behavioral problems, such as
aggression, self-injurious behavior, and severe tantrums, that keep the
person with ASD from functioning more effectively at home or school. The
medications used are those that have been developed to treat similar
symptoms in other disorders. Many of these medications are prescribed
"off-label." This means they have not been officially approved by the FDA
for use in children, but the doctor prescribes the medications if he or she
feels they are appropriate for your child. Further research needs to be
done to ensure not only the efficacy but the safety of psychotropic agents
used in the treatment of children and adolescents.

A child with ASD may not respond in the same way to medications as
typically developing children. It is important that parents work with a
doctor who has experience with children with autism. A child should be
monitored closely while taking a medication. The doctor will prescribe the
lowest dose possible to be effective. Ask the doctor about any side effects
the medication may have and keep a record of how your child responds to the
medication. It will be helpful to read the "patient insert" that comes with
your child's medication. Some people keep the patient inserts in a small
notebook to be used as a reference. This is most useful when several
medications are prescribed.

Anxiety and depression. The selective serotonin reuptake
inhibitors (SSRI's) are the medications most often prescribed for symptoms
of anxiety, depression, and/or obsessive-compulsive disorder (OCD). Only
one of the SSRI's, fluoxetine, (Prozac®) has been approved by the FDA for
both OCD and depression in children age 7 and older. Three that have been
approved for OCD are fluvoxamine (Luvox®), age 8 and older; sertraline
(Zoloft®), age 6 and older; and clomipramine (Anafranil®), age 10 and
older.4
Treatment with these medications can be associated with decreased frequency
of repetitive, ritualistic behavior and improvements in eye contact and
social contacts. The FDA is studying and analyzing data to better
understand how to use the SSRI's safely, effectively, and at the lowest
dose possible.

Behavioral problems. Antipsychotic medications have been
used to treat severe behavioral problems. These medications work by
reducing the activity in the brain of the neurotransmitter dopamine. Among
the older, typical antipsychotics, such as haloperidol (Haldol®),
thioridazine, fluphenazine, and chlorpromazine, haloperidol was found in
more than one study to be more effective than a placebo in treating serious
behavioral problems.26
However, haloperidol, while helpful for reducing symptoms of aggression,
can also have adverse side effects, such as sedation, muscle stiffness, and
abnormal movements.

Placebo-controlled studies of the newer "atypical" antipsychotics are
being conducted on children with autism. The first such study, conducted by
the NIMH-supported Research Units on Pediatric Psychopharmacology (RUPP)
Autism Network, was on risperidone (Risperdal®).27
Results of the 8-week study were reported in 2002 and showed that
risperidone was effective and well tolerated for the treatment of severe
behavioral problems in children with autism. The most common side effects
were increased appetite, weight gain and sedation. Further long-term
studies are needed to determine any long-term side effects. Other atypical
antipsychotics that have been studied recently with encouraging results are
olanzapine (Zyprexa®) and ziprasidone (Geodon®). Ziprasidone has not been
associated with significant weight gain.

Seizures. Seizures are found in one in four persons with
ASD, most often in those who have low IQ or are mute. They are treated with
one or more of the anticonvulsants. These include such medications as
carbamazepine (Tegretol®), lamotrigine (Lamictal®), topiramate (Topamax®),
and valproic acid (Depakote®). The level of the medication in the blood
should be monitored carefully and adjusted so that the least amount
possible is used to be effective. Although medication usually reduces the
number of seizures, it cannot always eliminate them.

Inattention and hyperactivity. Stimulant medications such
as methylphenidate (Ritalin®), used safely and effectively in persons with
attention deficit hyperactivity disorder, have also been prescribed for
children with autism. These medications may decrease impulsivity and
hyperactivity in some children, especially those higher functioning
children.

Several other medications have been used to treat ASD symptoms; among them
are other antidepressants, naltrexone, lithium, and some of the
benzodiazepines such as diazepam (Valium®) and lorazepam (Ativan®). The
safety and efficacy of these medications in children with autism has not
been proven. Since people may respond differently to different medications,
your child's unique history and behavior will help your doctor decide which
medication might be most beneficial.

Adults with an Autism Spectrum Disorder

Some adults with ASD, especially those with high-functioning autism or
with Asperger syndrome, are able to work successfully in mainstream jobs.
Nevertheless, communication and social problems often cause difficulties in
many areas of life. They will continue to need encouragement and moral
support in their struggle for an independent life.

Many others with ASD are capable of employment in sheltered workshops
under the supervision of managers trained in working with persons with
disabilities. A nurturing environment at home, at school, and later in job
training and at work, helps persons with ASD continue to learn and to
develop throughout their lives.

The public schools' responsibility for providing services ends when the
person with ASD reaches the age of 22. The family is then faced with the
challenge of finding living arrangements and employment to match the
particular needs of their adult child, as well as the programs and
facilities that can provide support services to achieve these goals. Long
before your child finishes school, you will want to search for the best
programs and facilities for your young adult. If you know other parents of
ASD adults, ask them about the services available in your community. If
your community has little to offer, serve as an advocate for your child and
work toward the goal of improved employment services. Research the
resources listed in the back of this brochure to learn as much as possible
about the help your child is eligible to receive as an adult.

Living Arrangements for the Adult with an Autism Spectrum Disorder

Independent living. Some adults with ASD are able to live
entirely on their own. Others can live semi-independently in their own home
or apartment if they have assistance with solving major problems, such as
personal finances or dealing with the government agencies that provide
services to persons with disabilities. This assistance can be provided by
family, a professional agency, or another type of provider.

Living at home. Government funds are available for
families that choose to have their adult child with ASD live at home. These
programs include Supplemental Security Income (SSI), Social Security
Disability Insurance (SSDI), Medicaid waivers, and others. Information
about these programs is available from the Social Security Administration
(SSA). An appointment with a local SSA office is a good first step to take
in understanding the programs for which the young adult is eligible.

Foster homes and skill-development homes. Some families
open their homes to provide long-term care to unrelated adults with
disabilities. If the home teaches self-care and housekeeping skills and
arranges leisure activities, it is called a "skill-development" home.

Supervised group living. Persons with disabilities
frequently live in group homes or apartments staffed by professionals who
help the individuals with basic needs. These often include meal
preparation, housekeeping, and personal care needs. Higher functioning
persons may be able to live in a home or apartment where staff only visit a
few times a week. These persons generally prepare their own meals, go to
work, and conduct other daily activities on their own.

Institutions. Although the trend in recent decades has
been to avoid placing persons with disabilities into long-term-care
institutions, this alternative is still available for persons with ASD who
need intensive, constant supervision. Unlike many of the institutions years
ago, today's facilities view residents as individuals with human needs and
offer opportunities for recreation and simple but meaningful work.

Research into Causes and Treatment of Autism Spectrum Disorders

Research into the causes, the diagnosis, and the treatment of autism
spectrum disorders has advanced in tandem. With new well-researched
standardized diagnostic tools, ASD can be diagnosed at an early age. And
with early diagnosis, the treatments found to be beneficial in recent years
can be used to help the child with ASD develop to his or her greatest
potential.

In the past few years, there has been public interest in a theory that
suggested a link between the use of thimerosal, a mercury-based
preservative used in the measles-mumps-rubella (MMR) vaccine, and autism.
Although mercury is no longer found in childhood vaccines in the United
States, some parents still have concerns about vaccinations. Many
well-done, large-scale studies have now been done that have failed to show
a link between thimerosal and autism. A panel from the Institute of
Medicine is now examining these studies, including a large Danish study
that concluded that there was no causal relationship between childhood
vaccination using thimerosal-containing vaccines and the development of an
autism spectrum disorder,28 and
a U.S. study looking at exposure to mercury, lead, and other heavy
metals.

Research on the Biologic Basis of ASD

Because of its relative inaccessibility, scientists have only recently
been able to study the brain systematically. But with the emergence of new
brain imaging tools—computerized tomography (CT), positron emission
tomography (PET), single photon emission computed tomography (SPECT), and
magnetic resonance imaging (MRI), study of the structure and the
functioning of the brain can be done. With the aid of modern technology and
the new availability of both normal and autism tissue samples to do
postmortem studies, researchers will be able to learn much through
comparative studies.

Postmortem and MRI studies have shown that many major brain structures are
implicated in autism. This includes the cerebellum, cerebral cortex, limbic
system, corpus callosum, basal ganglia, and brain stem.29 Other research is focusing on the role of
neurotransmitters such as serotonin, dopamine, and epinephrine.

Research into the causes of autism spectrum disorders is being fueled by
other recent developments. Evidence points to genetic factors playing a
prominent role in the causes for ASD. Twin and family studies have
suggested an underlying genetic vulnerability to ASD.30 To further research in this field, the Autism Genetic
Resource Exchange, a project initiated by the Cure Autism Now Foundation,
and aided by an NIMH grant, is recruiting genetic samples from several
hundred families. Each family with more than one member diagnosed with ASD
is given a 2-hour, in-home screening. With a large number of DNA samples,
it is hoped that the most important genes will be found. This will enable
scientists to learn what the culprit genes do and how they can go
wrong.

Another exciting development is the Autism Tissue Program
(http://www.brainbank.org), supported by the Autism Society of America
Foundation, the Medical Investigation of Neurodevelopmental Disorders
(M.I.N.D.) Institute at the University of California, Davis, and the
National Alliance for Autism Research. The program is aided by a grant to
the Harvard Brain and Tissue Resource Center
(http://www.brainbank.mclean.org), funded by the National Institute of
Mental Health (NIMH) and the National Institute of Neurological Disorders
and Stroke (NINDS). Studies of the postmortem brain with imaging methods
will help us learn why some brains are large, how the limbic system
develops, and how the brain changes as it ages. Tissue samples can be
stained and will show which neurotransmitters are being made in the cells
and how they are transported and released to other cells. By focusing on
specific brain regions and neurotransmitters, it will become easier to
identify susceptibility genes.

Recent neuroimaging studies have shown that a contributing cause for
autism may be abnormal brain development beginning in the infant's first
months. This "growth dysregulation hypothesis" holds that the anatomical
abnormalities seen in autism are caused by genetic defects in brain growth
factors. It is possible that sudden, rapid head growth in an infant may be
an early warning signal that will lead to early diagnosis and effective
biological intervention or possible prevention of autism.31

The Children's Health Act of 2000—What It Means to Autism Research

The Children's Health Act of 2000 was responsible for the creation of the
Interagency Autism Coordinating Committee (IACC), a committee that includes
the directors of five NIH institutes—the National Institute of Mental
Health, the National Institute of Neurological Disorders and Stroke, the
National Institute on Deafness and Other Communication Disorders (NIDCD),
the National Institute of Child Health and Human Development (NICHD), and
the National Institute of Environmental Health Sciences (NIEHS)—as well as
representatives from the Health Resource Services Administration, the
National Center on Birth Defects and Developmental Disabilities (a part of
the Centers for Disease Control), the Agency for Toxic Substances and
Disease Registry, the Substance Abuse and Mental Health Services
Administration, the Administration on Developmental Disabilities, the
Centers for Medicare and Medicaid Services, the U.S. Food and Drug
Administration, and the U.S. Department of Education. The Committee,
instructed by the Congress to develop a 10-year agenda for autism research,
introduced the plan, dubbed a "matrix" or a "roadmap," at the first Autism
Summit Conference in November 2003. The roadmap indicates priorities for
research for years 1 to 3, years 4 to 6, and years 7 to 10.

The five NIH institutes of the IACC have established the Studies to
Advance Autism Research and Treatment (STAART) Network, composed of eight
network centers. They will conduct research in the fields of developmental
neurobiology, genetics, and psychopharmacology. Each center is pursuing its
own particular mix of studies, but there also will be multi-site clinical
trials within the STAART network.

The STAART centers are located at the following sites:

University of North Carolina, Chapel Hill

Yale University, Connecticut

University of Washington, Seattle

University of California, Los Angeles

Mount Sinai Medical School, New York

Kennedy Krieger Institute, Maryland

Boston University, Massachusetts

University of Rochester, New York

A data coordination center will analyze the data generated by both the
STAART network and the Collaborative Programs of Excellence in Autism
(CPEA). This latter program, funded by the NICHD and the NIDCD Network on
the Neurobiology and Genetics of Autism, consists of 10 sites. The CPEA is
at present studying the world's largest group of well-diagnosed individuals
with autism characterized by genetic and developmental profiles.

Center for Childhood Neurotoxicology and Assessment, University of
Medicine & Dentistry, New Jersey

The Center for the Study of Environmental Factors in the Etiology of
Autism, University of California, Davis

Addendum to Autism Spectrum Disorders February 2007

This addendum to the booklet Autism Spectrum Disorders was
prepared to clarify information contained in the booklet; and to provide
updated information on the prevalence of autism spectrum disorders.

Prevalence

In 2007 - the most recent government survey on the rate of autism - the
Centers for Disease Control (CDC) found that the rate is higher than the
rates found from studies conducted in the United States during the 1980s
and early 1990s (survey based on data from 2000 and 2002). The CDC survey
assigned a diagnosis of autism spectrum disorder based on health and school
records of 8 year olds in 14 communities throughout the U.S. Debate
continues about whether this represents a true increase in the prevalence
of autism. Changes in the criteria used to diagnose autism, along with
increased recognition of the disorder by professionals and the public may
all be contributing factors. Nonetheless, the CDC report confirms other
recent epidemiologic studies documenting that more children are being
diagnosed with an ASD than ever before.

Data from an earlier report of the CDC's Atlanta-based program found the
rate of autism spectrum disorder was 3.4 per 1,000 for children 3 to 10
years of age. Summarizing this and several other major studies on autism
prevalence, CDC estimates that 2–6 per 1,000 (from 1 in 500 to 1 in 150)
children have an ASD. The risk is 3-4 times higher in males than females.
Compared to the prevalence of other childhood conditions, this rate is
lower than the rate of mental retardation (9.7 per 1,000 children), but
higher than the rates for cerebral palsy (2.8 per 1,000 children), hearing
loss (1.1 per 1,000 children), and vision impairment (0.9 per 1,000
children).1 The CDC notes that these studies do not provide a national
estimate.

For additional data, please visit the autism section of the CDC Web
site.

Fragile X

The original booklet and Web page contains the following statement about
inheriting Fragile X Syndrome:

"For an unknown reason, if a child with ASD also has Fragile X, there is a
one-in-two chance that boys born to the same parents will have the
syndrome2.
Other members of the family who may be contemplating having a child may
also wish to be checked for the syndrome."

A distinction can be made between a father’s and mother’s ability to pass
along to a daughter or son the altered gene on the X chromosome that is
linked to fragile X syndrome. Because both males (XY) and females (XX) have
at least one X chromosome, both can pass on the mutated gene to their
children.

A father with the altered gene for Fragile X on his X chromosome will only
pass that gene on to his daughters. He passes a Y chromosome on to his
sons, which doesn’t transmit the condition. Therefore, if the father has
the altered gene on his X chromosome, but the mother’s X chromosomes are
normal, all of the couple’s daughters would have the altered gene for
Fragile X, while none of their sons would have the mutated gene.

Because mothers pass on only X chromosomes to their children, if the
mother has the altered gene for Fragile X, she can pass that gene to either
her sons or her daughters. If the mother has the mutated gene on one X
chromosome and has one normal X chromosome, and the father has no genetic
mutations, all the children have a 50-50 chance of inheriting the mutated
gene.

The odds noted here apply to each child the parents have.3
In terms of prevalence, the latest statistics are consistent in showing
that 5% of people with autism are affected by fragile X and 10% to 15% of
those with fragile X show autistic traits.

Medications

On October 6, 2006 the U.S. Food and Drug Administration (FDA) approved
risperidone (generic name) or Risperdal (brand name) for the symptomatic
treatment of irritability in autistic children and adolescents ages 5 to
16. The approval is the first for the use of a drug to treat behaviors
associated with autism in children. These behaviors are included under the
general heading of irritability, and include aggression, deliberate
self-injury and temper tantrums.

Olanzapine (Zyprexa) and other antipsychotic medications are used
“off-label” for the treatment of aggression and other serious behavioral
disturbances in children, including children with autism. Off-label means a
doctor will prescribe a medication to treat a disorder or in an age group
that is not included among those approved by the FDA.

Other medications are used to address symptoms or other disorders in
children with autism. Fluoxetine (Prozac) and sertraline (Zoloft) are
approved by the FDA for children age 7 and older with obsessive-compulsive
disorder. Fluoxetine is also approved for children age 8 and older for the
treatment of depression.

Fluoxetine and sertraline are antidepressants known as selective serotonin
reuptake inhibitors (SSRIs). Despite the relative safety and popularity of
SSRIs and other antidepressants, some studies have suggested that they may
have unintentional effects on some people, especially adolescents and young
adults. In 2004, after a thorough review of data, the Food and Drug
Administration (FDA) adopted a “black box” warning label on all
antidepressant medications to alert the public about the potential
increased risk of suicidal thinking or attempts in children and adolescents
taking antidepressants. In 2007, the agency extended the warning to include
young adults up to age 25. A “black box” warning is the most serious type
of warning on prescription drug labeling. The warning emphasizes that
children, adolescents and young adults taking antidepressants should be
closely monitored, especially during the initial weeks of treatment, for
any worsening depression, suicidal thinking or behavior, or any unusual
changes in behavior such as sleeplessness, agitation, or withdrawal from
normal social situations.

Disorders/Vaccinations

The Institute of Medicine (IOM) conducted a thorough review on the issue
of a link between thimerosal (a mercury based preservative that is no
longer used in vaccinations) and autism. The final report from IOM, Immunization Safety Review: Vaccines and Autism, released in May
2004, stated that the committee did not find a link.

Until 1999, vaccines given to infants to protect them against diphtheria,
tetanus, pertussis, Haemophilus influenzae type b (Hib), and
Hepatitis B contained thimerosal as a preservative. Today, with the
exception of some flu vaccines, none of the vaccines used in the U.S. to
protect preschool aged children against 12 infectious diseases contain
thimerosal as a preservative. The MMR vaccine does not and never did
contain thimerosal. Varicella (chickenpox), inactivated polio (IPV), and
pneumococcal conjugate vaccines have also never contained thimerosal.

A U.S. study looking at environmental factors including exposure to
mercury, lead and other heavy metals is ongoing.

4 Newschaffer CJ (Johns Hopkins Bloomberg School of
Public Health). Autism Among Us: Rising Concerns and the Public
Health Response [Video on the Internet]. Public Health Training
Network, 2003 June 20. Available from:
http://www.publichealthgrandrounds.unc.edu/autism/webcast.htm.

23 American Academy of Pediatrics Committee on Children
With Disabilities. The pediatrician's role in the diagnosis and management
of autistic spectrum disorder in children. Pediatrics, 2001;
107(5): 1221-1226.

To order a printed copy, call 1-866-615-NIMH (6464) toll-free. For
additional information, please visit the NIMH Web site at: http://www.nimh.nih.gov.

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Addendum to Autism Spectrum Disorders February 2007

This addendum to the booklet Autism Spectrum Disorders was
prepared to clarify information contained in the booklet; and to provide
updated information on the prevalence of autism spectrum disorders.

Prevalence

In 2007 - the most recent government survey on the rate of autism - the
Centers for Disease Control (CDC) found that the rate is higher than the
rates found from studies conducted in the United States during the 1980s
and early 1990s (survey based on data from 2000 and 2002). The CDC survey
assigned a diagnosis of autism spectrum disorder based on health and school
records of 8 year olds in 14 communities throughout the U.S. Debate
continues about whether this represents a true increase in the prevalence
of autism. Changes in the criteria used to diagnose autism, along with
increased recognition of the disorder by professionals and the public may
all be contributing factors. Nonetheless, the CDC report confirms other
recent epidemiologic studies documenting that more children are being
diagnosed with an ASD than ever before.

Data from an earlier report of the CDC's Atlanta-based program found the
rate of autism spectrum disorder was 3.4 per 1,000 for children 3 to 10
years of age. Summarizing this and several other major studies on autism
prevalence, CDC estimates that 2–6 per 1,000 (from 1 in 500 to 1 in 150)
children have an ASD. The risk is 3-4 times higher in males than females.
Compared to the prevalence of other childhood conditions, this rate is
lower than the rate of mental retardation (9.7 per 1,000 children), but
higher than the rates for cerebral palsy (2.8 per 1,000 children), hearing
loss (1.1 per 1,000 children), and vision impairment (0.9 per 1,000
children).1 The CDC notes that these studies do not provide a national
estimate.

For additional data, please visit the autism section of the CDC Web
site.

Fragile X

The original booklet and Web page contains the following statement about
inheriting Fragile X Syndrome:

"For an unknown reason, if a child with ASD also has Fragile X, there is a
one-in-two chance that boys born to the same parents will have the
syndrome2.
Other members of the family who may be contemplating having a child may
also wish to be checked for the syndrome."

A distinction can be made between a father’s and mother’s ability to pass
along to a daughter or son the altered gene on the X chromosome that is
linked to fragile X syndrome. Because both males (XY) and females (XX) have
at least one X chromosome, both can pass on the mutated gene to their
children.

A father with the altered gene for Fragile X on his X chromosome will only
pass that gene on to his daughters. He passes a Y chromosome on to his
sons, which doesn’t transmit the condition. Therefore, if the father has
the altered gene on his X chromosome, but the mother’s X chromosomes are
normal, all of the couple’s daughters would have the altered gene for
Fragile X, while none of their sons would have the mutated gene.

Because mothers pass on only X chromosomes to their children, if the
mother has the altered gene for Fragile X, she can pass that gene to either
her sons or her daughters. If the mother has the mutated gene on one X
chromosome and has one normal X chromosome, and the father has no genetic
mutations, all the children have a 50-50 chance of inheriting the mutated
gene.

The odds noted here apply to each child the parents have.3
In terms of prevalence, the latest statistics are consistent in showing
that 5% of people with autism are affected by fragile X and 10% to 15% of
those with fragile X show autistic traits.